If you're living with a chronic illness, you're in the right place.

Monday, July 18, 2016

Déjà Vu

12:00 PM Posted by Tiffany Taft , , , ,
I've probably had Crohn's disease since high school - which was in the early 90s; I never went to the doctor because I never had major symptoms until I was much older.  I did have mind numbing fatigue and random joint pains through college, but I chalked it up to knee surgery I'd had when I was 14.  Even if it was in the wrong leg...I mean I must have been walking funny to favor the injured side.

It wasn't until I was 26, working more than full time hours in the corporate world, that I had blood in a bowel movement.  Ok, if I'm real about it the toilet bowl looked like it was full of kool aid.  It was a lot of blood and it was scary.  I talked to a friend of mine at work who I knew had some digestive problems and asked her what to do.  She had seen a great gastroenterologist at Northwestern and told me to go see him.

"Do you really think I need to go?  I'm going on vacation in a few weeks." This was my logic in response to filling a toilet with blood.  She cajoled me to go see my primary care doctor, at a minimum, since I could get in to that office in a few days versus several weeks.  So I did, and he told me I needed to see a gastroenterologist and that I should cancel my vacation.

Cancel my vacation?  Surely you jest, good doctor.

After I got home from Jamaica, I got in to see my first gastroenterologist and after a few tests was told I had Crohn's disease.  It took a matter of months, which compared to the 3 to 5 year average to diagnose Crohn's, I was pretty fortunate.  It was mild and confined to my small intestines, so I went on a drug called Pentasa.  Which, if you don't know, is - or was, 16 capsules a day.  Who thought that was a good idea?  I remember them to this day because they were a pretty shade of blue.  I'd pop 4 of those bad boys 4 times a day but after a month it didn't seem to be doing a heck of a lot.

Sixteen of these puppies.  Six. Teen.
So I was put on a milder steroid, budesonide, which ended up giving me headaches and high blood pressure.  The lack of response of my "mild" Crohn's disease to these standard, first line treatments put my diagnosis into question.  Not by me initially, but by my doctor.  I went from a quick, easy diagnosis into what I like to call medical purgatory.  And that messed with my head a long, long time.

Over the next year or so I had every test known to man it seemed.  Sometimes twice.  It was during this time I switched to one of the IBD specialists in the practice and he was pretty sure I didn't have Crohn's disease.  Great!  So why do my hips and knees hurt so badly, then?  Why am I still going to the bathroom 10-15 times a day?  Nobody knew.

The testing was maddening because of its inconsistencies and lack of definitive answers in one direction or another.  I had dangerously low vitamin B12, but after peeing in a jug for 24-hours to measure if I absorbed it properly, the test came back normal.  I took a blood test to look for IBD markers and came back positive for ulcerative colitis, not Crohn's disease.  These are the 2 that stick out in my mind, but there were many others.  Elevated sedementation rate but normal C-Reactive protein  (both general indicators of inflammation in the body) was my personal favorite.  I was literally about to walk away from it all - no more doctors, no more tests, I'll just live with whatever the hell this is when I developed my first fistula.  And that little tunnel in my body from my colon to my skin confirmed the diagnosis in my doctor's mind, without a doubt.

Calling Dr. Fine, Dr. Howard, Dr. Fine!
Unfortunately it didn't confirm it in my mind.  I lived in this parallel process world in my head with fear that they would tell me it wasn't Crohn's again, which meant I'd go back to all the testing and head scratching simultaneously with a vehement denial that I actually had the disease.  I was petrified that they'd take away a diagnosis that I didn't even believe I had.

As time went by, the diagnosis stuck. Nobody questioned it and I was put on a high powered drug called Remicade.  I only received 3 doses before I developed an allergy, but even in those 3 doses I felt better.  I've never gone back to less powerful medications since then (2004).  Thankfully the pharmaceutical industry has invested heavily in these types of medications (will refrain from cynical commentary about how much money they make from them) and I have options should my current medication, Cimzia, stop working.  Since 2004 I've only had surveillance testing, whether it's the every 3 year colonoscopy or blood draws every 6 months to make sure things are cool.  For the most part they have been, or if things went uncool there was a logical reason and course of action.

On Friday I met with my current gastroenterologist.  The IBD guy I saw at Northwestern moved to another state.  Plus when he got promoted he technically was my boss, and that was a little bit weird for me.  I really like and respect my current doc, but Friday gave me a bit of Déjà vu.  We talked about my endoscopy and how the eosinophil count only went down a little bit, and my esophagus essentially looked the same, so the diet didn't work.  In addition to removing dairy and egg from my diet and doing another 6-8 weeks of food elimination, she started talking about additional tests:  1 to measure the pH in my esophagus for 24-hours to see if acid reflux is a factor (Bravo pH test), another to measure if food exits my stomach in a timely manner (gastric emptying test), and another to take images of my esophagus by drinking barium to see if it's narrowed or has other issues that might be causing symptoms (fluro-esophagram).

A is a normal esophagus. B is narrowed due to EoE.  Not sure which I'm hoping for.
3 more tests, in addition to the next endoscopy scheduled for the end of September.  I cringed, for multiple reasons, but primarily because of what I wrote about above.  She's being thorough, I understand that, and if I didn't have those experiences in my past I probably would view this as a hassle at worst.  One source of amusement in all of this is the irony that the gastric emptying test requires me to eat some eggs, which I can't have because I've removed dairy and eggs from my diet to round out the top 8 most allergic foods.  So that one will have to wait.  Damn.

The esophagram is scheduled for a few weeks.  My cynicism tells me not to expect much.  After all,  I've been here before.


Monday, July 11, 2016

No, I Don't Have Gluten Sensitivity

12:57 PM Posted by Tiffany Taft , ,
I have a lot of good people in my life.  Since my 20s, I've adopted a "low drama" friend strategy in that I don't have friendships with people who create unnecessary bullshit.  It's a good method, you should try it if you haven't already.

I also have a job where I'm constantly talking to people, listening to their stories, sharing parts of mine if it's appropriate (therapy relationships are strange things). What do I mean by appropriate?  When I'm meeting with a client, that hour is their time.  It's about them and what they're dealing with that day.  We're taught in graduate school to establish boundaries for many reasons I won't get into here, but boundaries are a good idea and therapists vary on how strict or loose they keep boundaries with clients.  Like a lot of things in my profession, this is a grey area.

I've heard some crazy stories of loose therapist boundaries.  Cray. Zee.

Speaking of loose boundaries.
I tend to land somewhere in the middle.  I have pictures of my kids in my office, for example.  I do disclose my illness to some of my clients, some I don't.  It depends on if them knowing I have Crohn's disease - or now, eosinophilic esophagitis on top of that, will help with their treatment somehow.  I know that sounds kind of strange, but it's a critical decision I make with each disclosure.  If I don't think it'll be useful, or even harmful, I don't bring it up.  I've seen many clients who never knew I was ill.

Then again, I'm blogging on the internet about my experiences.  So, there's that.

Disclosure is something every person living with an invisible illness deals with on a regular basis.  We know that trying to keep an illness hidden from everyone is actually more detrimental than telling just one person.  Keeping an illness hidden can be downright exhausting.  And the stress of being outed certainly doesn't help anything, and can lead to considerable anxiety and social isolation.

When you socialize with an illness that impacts what you can or cannot eat, it almost immediately puts you in a situation to disclose.  And deal with all the circumstances that go along with it.  I've been on this elimination diet the past 6 weeks or so and have had to explain to people that I can't eat several foods like soy or wheat.  For some reason that seems like an open invitation for many people to launch into a discussion on gluten sensitivity.

My immediate reaction is to cringe, which isn't fair.  Even though the jury is still out in the research world about what, exactly, gluten sensitivity is there are plenty of people who feel crappy after eating too much gluten.  Or FODMAPs, as the case may be panning out.  However, I do think that gluten has gotten a bad rap and is this black sheep of the food chain like eggs were in the 90s.  And I think there are more people claiming gluten sensitivity than the actual prevalence, so much so that a stigma about it has emerged.

Oh, you're one of those people.

Where those implies that my symptoms or condition isn't real rather some made up bullshit that I hide behind so I can be picky in restaurants.

I cringe because my esophagus is full of eosinophils, which shouldn't be there at all, and there's active inflammation - damage is being done.  The biopsies came back positive for EoE from my endoscopy last week.  I will say I probably have fewer symptoms than someone with gluten sensitivity has, to be honest. But I know as I eat, the food I put into my system is causing my system to attack itself and I don't know what food(s) are the culprit.  But I fall silent instead of trying to explain the details of EoE, nod in understanding of how difficult a gluten sensitivity must be, and change the subject.

I thought Crohn's disease was hard to explain, but it seems like someone usually knows someone with it.  Or I just haven't met enough new people to have to explain it again.  It sits on the back burner, I deal with it when it decides to flare up, then I put it back on the shelf.  EoE is in my face.  The people in my life don't mean to cause me to cringe.  As I said, they're alright.  But it just seems to come with this new territory I'm in.

I look forward to the days I can put EoE on the shelf, too.


Saturday, July 9, 2016

Results Anxiety

6:55 AM Posted by Tiffany Taft , ,
I stood and stared into my refrigerator this morning for about 5 minutes.  Not because it's empty except for a lonely bottle of ketchup.  We're fortunate to have food in our house, including a host of fruits and vegetables that I get from the internet (Door to Door Organics).  Because I'm lazy.  Actually it was the bowl of apples that drew my stare.  I love a good, cold apple.  Preferably honey crisp or fuji or granny smith.  Red delicious run too much risk of being mushy, in my opinion.

My face when biting a mushy apple.

I don't want to eat any more apples.  The thought of eating another apple sends me into a catatonic state, staring into my fridge.  I look around at the other food, most of which is off limits to me right now because I'm still on the elimination diet.

My endoscopy wasn't clear.  As my GI doc put it "It's not too bad" but I still have inflammation in my esophagus and stomach, plus some new stuff that I don't really want to even think about.  It could be nothing or it could be the Crohn's disease causing issues further up the system than it usually likes to cause issues.  I have an appointment on Friday to go over everything and next steps.

A likely option will be to eliminate the last 2 "Top 8" foods that trigger EoE - dairy and eggs.  My gastroenterologist was trying to be nice when we planned this diet and let me keep these 2 food groups because my allergy testing for them came back 0/6, or no reaction.  But according to the research, 50% of people with EoE have symptoms after dairy exposure even without a positive allergy test.

I've worked at Northwestern University since 2004 and have a good relationship with the 2 experts in eosinophilic GI illness there, so I can bounce things off of them.  I'm not going to lie, it's nice to have that access and I'm very privileged.  I know what it's like to not have access to your doctors, personally and through stories I hear from my clients. I chatted with one yesterday who said removing dairy and egg was the logical next step, then repeat endoscopy in 6-8 weeks.  I'm guessing my doctor will say the same, unless by some miracle the biopsy results are better than the last time.  I'm not very optimistic, but hey stranger things have happened.  Like "The View" still being on the air.

As I looked into the fridge this morning I scanned the foods I've been able to have the past 2 months that will no longer be allowed.  What the hell am I going to put in my coffee?  Rice milk?  Pretty sure that's a crime in some places.

I recently had a conversation with a client on the versatility of the word "shit." 

(Hey, I do important work, people)

All I seem to think when it's time to find food these days is "shit, nothing to eat" if I'm out and not prepared with bringing my own food or "this is some bullshit" when shopping and reading food labels or "fuck this shit" and resisting the urge to just eat a loaf of bread. 

See, versatile. 

Profanity aside, I'm feeling pretty frustrated and defeated right now. This is a natural progression through adjustment to something like this that thousands of people have done before me, and will do after me.  It'll get better, but the light at the end of the tunnel is still pretty far in the distance right now as my doctor and I try to figure out what the hell to do.

In the meantime, I ate the apple.

Thanks for reading about my bullshit.


Friday, July 1, 2016

Test Anxiety

6:47 AM Posted by Tiffany Taft , , ,
T-minus 3 days until my next endoscopy.  You'd think with the sheer volume of times I've been through medical testing, it'd be no big deal.  Yet here I sit, waiting for Tuesday, 9 am, to arrive so I can get my esophagus checked out to see if this diet I've been on is actually working at a physiological level.

"Good evening, Clarice."
 I want to think it is, I am better.  But I still have some symptoms depending on what I eat - rice, for example, takes a bit to make it down the ol' pipe.  It could be something as simple as there's some narrowing going on from the inflammation I had so I need a dilation, or my gastroenterologist will every-so-carefully stretch my esophagus back to it's normal width with some type of tool that I don't even want to think about.  It probably belongs on Game of Thrones or something.

Full disclosure, I've watched about 3 1/2 episodes of GoT.  Enough to hate Joffrey like the rest of the world.  That's about it.

At least this isn't my gastroenterologist.
I do get propofol for sedation, so there's that.

My worry is she's going to see not much improvement and that while I feel better, the diet isn't right.  There might be other foods that could be causing me problems, so I could face another 6 weeks of eliminating even more foods and having yet another endoscopy.  I honestly have no clue what the plan is, and that makes it easy for me to go down the "what if" rabbit hole.

I tell people all the time not to go down that rabbit hole, or if they do, don't spend a whole lot of time there.

Medical testing is stressful, whether you're new to the whole thing or have been in the system for over a decade, as I have.  We say anxiety decreases with exposure to feared events because we learn that we can manage through situations that seem almost catastrophically bad and come out the other side relatively OK.  But for some reason medical testing is a different animal, and research backs up the negative effects it has on the body.

According to a 2011 American Medical Association article, between 8% and 26% of abnormal test results are not discussed with patients in a "timely" manner, even with the use of electronic medical records.  Depending on who your doctor is, patients can wait over a week for results, which may not be explained well or even left on a voicemail.

I remember when I was being worked up for Crohn's disease and the tests I went through, sometimes 2, 3, 4 times.  It was before the popularity of MyChart or other patient portals, and it was excruciating in terms of the wait, the phone tag, the anticipation.  I hear stories from clients about this dance with the health care system and the anxiety it creates.  For people seeking a diagnosis, waiting to only find out everything is normal can be a harder thing to hear than "you have [insert illness here]." I know that sounds strange in a way, but it also makes complete sense.

A few years ago I wrote about the Catch 22 of normal test results.  You can check it out here.  For Tuesday, I don't think I've wanted test results to be more normal in my life.  Here's hoping.

No Whammies!